Living With Chronic Migraine with Aura written from our reader and featured writer, Nikki Albert . Nikki is also the powerhouse behind Brainless Blogger, a valued member of Fibro Blogger Directory.
I was able to focus on my overall wellbeing and self-identity and self-worth and that is where I found acceptance.–Nikki Albert
My diagnosis: Chronic Migraine with Aura, Fibromyalgia, Depression, Vertigo
What were your symptoms?
I am a bit of a complex patient with a nice stack of diagnosis. However, the biggies as I call them, are fibromyalgia, chronic migraine with aura, Major Depressive Disorder and vertigo. As you can imagine, that is an assortment of symptoms. A whole lot of symptoms and pain-ness to go around.
As you can imagine, pain is a major issue for me. I am what they call ‘non-responsive to treatment’ for my daily chronic migraine with aura. So for two days of the week I can try my abortive medication and the rest of the week… well, just get by. That combined with fibromyalgia makes for a lot if a pain toll,
However, fibromyalgia is more than just pain. It is immense fatigue, it is cognitive dysfunction, sleep dysfunction (I don’t even remember the last time I slept well or through the night) and a random assortment of symptoms that jump on board. I am always fatigued. I always have some level of brain fog. And a baseline pain is my existence with flare-ups from there. You get paresthesia and allodynia. And IBS-D. D means Dash to the bathroom about 50 times.
Migraine with aura I get auras, like visually, or olfactory, or tactile… sometimes even auditory. I have light sensitivity (that comes with fibro as well) and sound sensitivity (also a fibro thing). I get extreme nausea sometimes. I can get confused and spatially disorientated. I can get aphasia where I just can’t seem to communicate or understand people. I get allodynia where my skin IS ON FIRE (Also happens severely with fibro). Pain varies from 7-9. (10 being a mythical number I will use for some pain I have not had yet)
Depression came from unmanaged pain. And the depression became severe. Without medication and therapy, I might not even be here to talk about it. (Resource: Sickly Confidential co-creator Annette Lopez releases a helpful article for those battling depression). I had a lot of suicidal ideation and two suicide attempts. So I am lucky to be here talking about it.
My vertigo has been around 3 years and it causes constant dizziness that gets worse as the day goes on. Without my medication to suppress it, it also causes disequilibrium where the ground feels like it is moving, shifting, falling… and I lurch or stagger or fall too. And it comes with severe external vertigo bouts where I cannot do anything but lay there until they are over but they also have like this horrible long enduring ‘hangover’ of fatigue and dizziness and zoned out feeling after they are done. Any motion, like a car ride, makes it worse. Sitting up too long, standing too long, makes it worse. I need to rest a lot because it fatigues me. I nap a few times a day just to help me get through it. That is with my medication, without it, I don’t get off the couch at all.
Can you share with us the diagnosis story?
It started at around age 8 when I complained about knee pain frequently. Thing is I have hypermobility syndrome and it can cause joint pain. Then came insomnia and fatigue. And more diffuse all over pain. I didn’t actually get that fibromyalgia diagnosis until I was 20 at the same time as migraine disease actually. The migraine with aura went chronic some five or so years later. Then after I finished university and went into the workforce the migraine attacks went daily and have never gone down since.
As you can imagine trying to work full-time with a boatload of not actually managed pain it can be mentally and emotionally draining and extremely stressful. That is when the depression jumped on board and that makes sense because, man, the pain was so intense and there was no relief… I missed work too much and the stress was Insane. Yet I pushed through and pushed through and the pain pushed back and that equalled a massive depression. I was constantly sleep deprived from the fibro insomnia. I was so fatigued all the time. I had brain fog and had to write notes to myself just to get through work. But, it was the pain from both combined, that really, really got to me. It was relentless. And my mood tanked.
My workplace was hostile and there were things said and ultimatums given… and I tried to commit suicide as a result. I felt like there was no end to the pain and no option but to suffer forever if I continued to exist like that… and that seemed like insanity. And it was insanity. I couldn’t keep up. I couldn’t do it. My doctor said I couldn’t. My psychologist said I couldn’t. My family said I couldn’t. My insurance company? Said I was totally cool to work. And that is what happened.
That work environment and that suicide attempt traumatized me. My self-worth was obliterated. My self-esteem shattered. And it would take some time to build this back up but I couldn’t do it working. I wasn’t thriving working. Period. I was just holding on.
Work was a constant struggle. And eventually, I went down to part-time and even that was a struggle. I guess migraine attacks do not like to obey a schedule or something. I worked through a lot of pain, confusion, disorientation, auras, nausea, light and sound sensitivity and all of that plus fibromyalgia pain and fibro fog fun. And working part-time in a different role had a lot of challenges for me because the new role was customer service. So a lot more customers. More transactions. More potential for errors when I wasn’t ‘all there’. But my mood was better because the medication for that worked exceptionally well for me. However, I still had no pain management for the migraine disease. I did for the fibromyalgia since the pain clinic put me on slow release tramadol. I just wasn’t quite that functional although I could fake it. I wasn’t dependable or reliable. I wasn’t all ‘there’ even when I was There.
But I thought maybe with my coping strategies I could make part-time work. Then suddenly I started getting these short, intense, daily dizzy spells. Weird. Then they became longer dizzy spells and after I felt very spaced out and would make a lot of weird errors at work. But then the vertigo started. Severe short bouts and hours of severe dizziness after. But Oh it got worse soon it was all the time with bouts of severe vertigo and constant orientation where the floor seemed to be falling all the time. And then sometimes I did fall abruptly. So no more driving for me. No more working. And on disability, I went. That was three years ago. I thought it would go away but it just has not. It has been as difficult to adapt to vertigo as pain if not harder. It is not diagnosed. In fact, the clinic I went to said it isn’t diagnosable due to all the conditions I have… could be caused by any of them, or something else entirely, they can’t figure it out.
Anyway, between them all, I’m extremely tired all the time and need to really pace myself as well as rest a few times a day. When I get very dizzy I have to lay down. I can get quite spacy and zoned out. Migraine attacks, well, those will lay you out some days and others you can be somewhat functional. Of the all, I manage fibromyalgia the best. I learned very young how to pace and my limits and when I could nudge those limits. That isn’t to say the symptoms or flare-ups do not get in the way because they do. Or that its fatigue doesn’t compound the fatigue from the other conditions because that really can happen. It is the migraine attacks being daily and the vestibular symptoms being constant that are difficult to get around in any way.
Either way, on disability I have slowly but surely built up my self-identity again. I adjusted my core values to accept who I am now (related: discovering your core values). I have worked on my self-worth and built it up again. And learned to value what I Can do instead of focusing on what I Cannot. I am recovering from the depression, the suicide attempt and what I endured in the workplace. I am becoming myself again. I have adapted and found acceptance. I cope far better with pain now via art therapy, meditation and journaling. As well as my main hobby which is writing and, of course, blogging. It is strange. I am worse than I have ever been with this vertigo added onto everything, but coping better than I ever have.
I’ve learned to value what I Can do instead of focusing on what I Cannot. – Nikki AlbertTweet
How has living with chronic migraine with aura affected your dating life or relationships?
I met my common-law spouse right before I was diagnosed with fibromyalgia and migraine disease back in the day. Way back in the day. So he has been around for it all.
It impacts our relationship though. How could it not? Just financially it is a nightmare. I had a career and we had two incomes. Then I worked only part-time and we had to adjust to that budget which led to some increase in debt. Then I had to go on disability but it took time so more debt. So we are debt-heavy and I make next to nothing. So that is a hell of a lot of financial stress right there.
Other than that there is little effect on our relationship. He knows I cannot do some things and he does those things. When he wants to do an activity I cannot he knows he can without guilt. And when we do things together he knows sometimes I need to go home early and have to go super duper uber prepared… and he helps me be prepared. He has a better memory for things like that.
Part of what propelled me to find my way to better health was seeing him sitting next to my hospital bed for hours looking so worried. – Georgina WhalenTweet
What lessons did you have to learn while living with chronic migraine with aura, depression, and vertigo?
I learned the very important lesson that one should never push through the pain and exceed your limits consistently or it will lead to survival mode… and that is Not meant to be lived in.
It will lead to depression or worse.
It will cause burn out or worse. We can’t live like that.
We have to stay within our limits. I had to learn a brutal lesson but learn it I did.
What steps did you take or how did you cope/find acceptance?
I found acceptance from the ashes of my crash and burn from work. Not right away. As I did return to work, at another location, part-time. But it started then and slowly inch by inch I began to learn more about myself and how I respond to stress with pain and depression.
When I became disabled I was able to focus on my overall wellbeing and self-identity and self-worth and that is where I found acceptance. That if I could pace and stay within my limits, focus on fulfillment and wellbeing, I could find acceptance about what I cannot change and maybe adapt more in the things I can change.
What advice would you give to someone struggling with their health or journey?
- Never push through the pain consistently
- Always pace; good day or bad day, pace to prevent Boom and Bust cycles
- Stay within your limits and you will be happier for it and you will achieve more by doing so, at a slower pace
What do you wish others knew?
I wish people knew, and by people I mean every single person, that overall wellbeing is vital, mental, emotional, and physical wellbeing are all important in our lives and need to be nourished.
Favor one over the other and your life will suffer for it. It also taught me fulfillment in life is not work.
Fulfillment has a lot of facets that I ignored while I struggled to maintain just work; like having a social life, being with family, pursuing my own hobbies and art, feeling valued and productive… things like that.
that overall wellbeing is vital, mental, emotional, and physical wellbeing are all important in our lives and need to be nourished. – Nikki AlbertTweet
Where can we find your blog?
Brainless Blogger is here
Show Nikki how grateful you are for her wisdom and advice by sharing this with your fellow spoonies and friends!
Well said Nikki! We all have to remember our health journeys are different . We can always adjust our goals based on what we can accomplish and learn to give ourselves forgiveness and grace when we can’t resume life we thought we would.
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